Chemotherapy round 4 day 8

I just put V to bed for the night.  She is doing pretty well.  This round is all new to us.  It is the first "high dose" chemo.  We came in early last Monday, and Violet got her hearing test.  They check her hearing before every round because the chemo can affect and damage hearing.  The tests came back perfect.  Then she had a limited MRI. I know I had mentioned earlier that Violets neurosurgeon noticed an area of her brain that he wanted to monitor.  Basically, the way that he explained it to us is that the area of the brain called the ventrical is a void where spinal fluid flows thru, it has a valve that opens and closes to allow spinal fluid in and out.   He believes that one of Violets valves was damaged by her brain tumor, and that now it traps spinal fluid so it isn't opening to let the fluid back out appropriately.   So hes concerned that it is causing pressure, and that he may need to go in and open that area up at some point. But that he saw no evidence of tumor, which is great news.  He asked us to get the limited MRI pictures to check on that valve before this round.   The pictures showed some improvement, so he felt comfortable for us to move forward with chemo.   We will have another limited MRI on the 3rd of June to check it again.   My standpoint is, clearly I don't want her to face another neurosurgery, but this one to repair the valve would be very minor, and he may not have to do anything at all.  It may heal on it's own, which would be awesome.  I love watching how Violet interacts with our neurosurgeon. After everything she has been thru she has a slight anxiety when it comes to anyone in a white coat, but she seems very calm and loving with him.   Its like she knows that he literally saved her life by standing over her for 16 hours tirelessly operating to get that nasty tumor out.  I think she recognizes his voice as he must have talked to her a lot while she was asleep during surgery.   Anyway, it's amazing to see the bond between them.

So, we got two new chemo drugs Monday and Tuesday.  One of the drugs require baths every six hours around the clock for four days.  So, she got baths day and night at ten and four.  By day four I was so completely exhausted as there was no sleep with this schedule.  But, I was amazed at how well our girl tolerated them.  She cried a bit everytime but always cooperated.  It MAY have helped that she had male nurses all four days that were very sweet to her.   She's a flirt:)   On Thursday she got her rescue stem cells that they collected way back at round one.   I was very excited as they brought them in, it felt like we were doing something awesome.  I like that they call it a rescue and that it is literally Violet rescuing herself with her own cells.   When they hooked her up to get them they told me that the cells are kept in a preservative and that it smells bad.  THEY WERENT KIDDING.   Think rotten creamed corn.  Our room reeked for a good 24 hours after.  You could smell it down the hall.  After the stem cell rescue she had to sit and have heart monitors and blood pressures every 15 minutes for 6 hours.   She did so great, and was so patient and still.

Now her cells have started kicking in and all her counts are super high, but the chemo hasn't attacked yet.  So, we are just waiting for that.  Her chemo will kick in at some point this week, knocking her to zero, leaving her weak and prone to illness and fevers and infection which can be very serious.   Then her rescue cells will fight back bringing her counts back up and we will get to go home.  Theres no knowing how long this will take, or how bad it will get.  But in the meantime she is fairly happy, eating well, and playful.  Its the calm before the storm.

She amazed us one day as we were walking the halls and her doctor saw her and said "Hi Violet, how are you?"  To which our little genius replied "Hi, I'm nauseous"   My jaw and the doctors hit the floor.   Did she just say nauseous????  She listens to everything here, and is learning all the medical lingo.  It's incredible and kinda sad.  She says heparin, (one of her meds) and nauseous and chemo, and helps the nurses thru every step of her care.

Among all the stress of Violets illness and care, we are moving this weekend.  It has been hard but with the help of my family and dearest friends we were able to get our apartment packed before we came to the hospital.  Moving is a huge stress but we are soo beyond grateful for all the help we have received and volunteers to help Saturday.  There is no way we could do this without you.   We were unable to stay where we are now as we cant afford it anymore with me not able to leave V to work and with all the medical bills.  But Charlies Mother and step father very lovingly are letting us rent a home from them, and the payment will be better than where we are now.  Charlie will be able to walk to work if he needs to, which is good as a few weeks ago his car completely quit on us with engine trouble.   We were able to find a very cheap car that is ugly as sin but mostly runs to get us  by for now.  But needless to say we have had a lot going on and lots of added stresses.  I lay in bed every night before I go to bed and think about all the things we have to be grateful for and all the love and support we have.  Beyond grateful to all of you.  This experience has definitively taught me what is important.  We have no money, and have to move and have cars that barely run, but we have a beautiful little girl, and the most amazing support system anyone could ask for.  Thank you to everyone reading this for all the love and support

Every round we meet new families, which is hard as you see more and more children get diagnosed and face this scary journey.  We have had several families that have reached back to help us when we were diagnosed, and they have been incredible support and guides.  The Bish's the Wellings, and Erika Decker were my amazing helpers when I wasn't sure I remembered how to breathe, and I have tried very hard to pay it forward by introducing ourselves and reaching out to new families.  Violet continues to make new friends.  She is thrilled that her sweet William is here with us this round.  Tonight in the playroom Violet took William by the hand and just gazed up at him as they walked around and around together.  William is quite a bit older than her, and is very big brotherly looking out for and protecting her.   She calls him MYLiam.  He got her a pop up play tent at a carnival his last admission and saved it this whole time to give to her.  She looks for him everywhere and worries when she hasn't seen him all day.   She hadn't seen him in several days and kept asking for him and I told her he wasn't feeling good so she took my mom to his door and wanted to put a heart sticker on his window for him. :)  One thing I can say is that this experience has created bonds I know we will keep for life and we all look out for eachother like family.  Despite all the fear and stress and how horrific this has all been we have found so much light from all the incredible people in our lives.  Thank you so much for your continued love and support.  Lots of love